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Newly Diagnosed and need advice on treatment

Hi all I have just been diagnosed with relapsing/remitting ms and will be meeting again next week to discuss and start treatment. What were the factors you considered when Choosing medication and any advice on choosing. Options seem to be 4 front line drugs. How did taking these affect your lifestyle, side affects , ease of use etc Any and all views appreciated Thanks

Colum, Hello and welcome to this site. I am brand new to the site as well only been on it for a couple of weeks. What I have found is a wealth of good information. For me, my neurologist prescribed Capaxone, it is a daily injection that is meant to slow down the progression of MS and reduce the number of relapses. Not to sound to cynical, but I really don’t know if it’s working or not. I started back in 2006 and recently been told that I have progressed to secondary progressive MS. It is a little different where I live (Belgium) as my doctor told me what medication to take, and being one who doesn’t like to question , I did what I was told. Since being diagnosed I have done a lot of research and decided that I will stay on the course that I am on now for now. The daily injection, while sounding hard is actually quire easy. There is an auto injector that does the hard work for you. After several years I’m finding harder to find a suitable spot to inject. Your skin become very hard over time and the auto injectors spring is not that strong. The side are minimal (for me), sometimes I get a small lump at the injection site and sometimes it itches a little but not for very long If you have any more questions just post like you did, I’m sure you will get a lot of very good opinions. Remember, MS hits everyone differently, no two people are the same. Keep us all posted! Greg

[quote=“Colum”] Hi all I have just been diagnosed with relapsing/remitting ms and will be meeting again next week to discuss and start treatment. What were the factors you considered when Choosing medication and any advice on choosing. Options seem to be 4 front line drugs. How did taking these affect your lifestyle, side affects , ease of use etc Any and all views appreciated Thanks [/quote] Hello Colum and welcome. I’ve only just been diagnosed in august and not been told yet what type of MS I have or been prescribed any medication yet. I’m going to a specialist MS centre in york in december to see the consultant, so hopefully I will be getting more info then. I will take the advice of the consultant and then make my decision about any suitable medication I take. I have taken a DMARD ( methotrexate) for psoriatic arthritis but I decided to stop recently because of side effects and other worries. All I can say is everyone responds to drugs differently. What may upset one person may be tolerated perfectly well by the next. Between yourself and the people caring for you hopefully you’ll decide on which medication to try. You can always switch to another one if you get unpleasant side effects. Hope this as helped in some way. All the best

Hi Colum, daughter takes Rebif (3 times weekly injections), supposed to reduce relapses by about a third. Unfortunately have not worked for daughter, has all the side effects such as itchy, sore skin, hair loss, fatigue, prolonged bleeding during periods, sore lumpy red injection sites, continuous headache and one relpase after the other. Some people have found Rebif to be really good so it is just a matter of sucking and seeing. There is somewhere on the internet you can take a test to see what would work best for you (not what works at reducing relapses but what would suit you better ie. injecting every day/3 times a week/once a week etc.). It is www.msdecisions.org.uk Hope it helps. Lx

hi colum

most injectables have an auto device and they also have a phone line for advice.

i’m on copaxone and the connections helpline is great, staffed by copaxone nurses and one even came out to see me.

good luck

carole x

Hi Colum ,I am new to this site as well this only my second post. I`v been on Avonex for the past 2 months, this is the once a week intramuscular injection. It doesnt leave any red marks or pitted skin on me as going into muscle, havent had any problems with it so far! It gives flu symptoms for a couple of hours after injection, so i take at night with paracetomol and ibuprofen. These symptoms subsided after the 3rd injection, now hardly have any. Everyone is different, what works for one might not work for another.This fits with My!! lifestyle thats why i chose it. The Dmd website will help you decide as Lindylou65 says good luck Kitty x

After I was originally dx I gave a lot of thought to this and I have to admit the Avonex was the one that appealed (wrong word but I’m sure you know what I mean!) most. I then found out I’m likely ppms so I don’t get DMDs after all but Avonex was the one I was going to opt for if I could.

Good luck whatever you choose

Sonia x

Don’t be fooled by the DMD myth. No matter what you take, there is evidence that your disease will still run its course. Personally, I chose not to take any DMDs as they weaken your immune system, exposing you to all sorts of potential horrors.

Hi

Had to smile at the last reply, there’s no myth, they reduce the frequency and severity of relapses. That’s all, and they do it very well for many of us. Relapses cause damage so it makes sense to prevent them if you can and that’s what DMDs do.

I’ve been on Betaferon for about 10 years. I was getting relapses every couple of months and now it’s down to less than one a years and I’m back at work within a couple of weeks.

I had flu symptoms for the first fwe weeks for a few hours after injecting but that wasn’t an issue as paracetamol took care of that. No other side effects. Also, injecting didn’t affect my lifestyle at all, takes a few seconds to do.

We’re lucky to have these options now, they weren’t available a few years ago so good luck with whatever you decide.

Where is the evidence that this happens? There’s no evidence that the front-line DMDs weaken your immune system.

If you start a DMD as soon as possible then if you are a responder, you will have fewer (far fewer) relapses. Also - this

Please, newly diagnosed people. This poster isn’t telling you the truth. He think that the DMDs won’t help, because at the time of his diagnosis, there wasn’t much information, but as the years go by, fewer and fewer people are needing full-time care. People have kept their mobility and health and if you don’t respond to the beta-interferons, there are newer, more potent drugs.

The DMDs do not weaken your immune system. There’s plenty of research from the site quoted above, which is written by neurologists and researchers.

Jon, stop trying to scare people. It’s not fair on those who are in a state of shock and who aren’t sure what to do. Your advice is incorrect.

The future looks pretty good for people with RRMS.

Ibu.

13 years on Rebif and still fine. I’m not a rarity - most people who respond to treatment are able to stay fit and keep walking, even if we have our slow days from time to time and need a stick.

Hello and welcome

I chose Rebif after working through the msdecisions website and the information pack that the hospital gave me. It seemed to fit into my lifestyle better. I didn’t fancy the intramuscular injection as it was a longer needle and didn’t like the sound of injecting every day, each to their own.

I’ve been on it for 4 years, had one sensory relapse a few months in and after that it kept me relapse free for 3.5 years. I had mild flu symptoms for the first 6 weeks or so then they wore off just as I went up to the full dose. They were easily controlled with ibuprofen and I inject at bedtime so I used to sleep through the worst anyway.

As Val says, they are meant to reduce the number and severity of relapses (which in turn will reduce the progression of disability as each relapse leaves a little damage) so for me it was a no brainer after having had two significant relapses in three months which led to diagnosis. It also felt good to be doing something positive in the fight against MS rather than waiting for the next relapse to strike …

Good luck with your choice

Tracey x

[quote=“montyclift”]

Don’t be fooled by the DMD myth. No matter what you take, there is evidence that your disease will still run its course. Personally, I chose not to take any DMDs as they weaken your immune system, exposing you to all sorts of potential horrors.

[/quote] Hello montyclift. Were all entitled to an opinion but with all due respect I’m afraid yours just may scare someone who’s new to ms and trying to make an informed choice. No offence meant…its just my opinion All drugs have side effects its true but we are informed of what these side effects are. If its something like nausea for example, the doc can prescribe anti-sickness drug. There is NO research based evidence on the market stating anything about potential horrors of taking DMD’s…that’s for Colum

I’d love to know how well you’ve done without taking any DMDs montyclift, if you don’t mind sharing?

I’m awaiting DX but if and when I am, I’ve decided I’m gonna take anything and everything available to fight this bloody thing. Maybe a bit foolhardy but just need to do as much as I can for my own sanity at least Gray

Thanks for all opinions and advice. I too am leaning towards dmds , as much for my sanity as the medical benefits. No time is good to be Dx for ms but i really feel positive , especially at the research into benztropine, and because there Is such a strong community. Thank you all

I hadn’t paid much attention to this, as it seems to work best in mice! I read a bit more and you could be on to something with this, but you still have to take a DMD as Benztropine won’t stop relapses and relapses are the pits.

Can you get onto a trial? There does seem to be a trial with Gilenya. If so, please let us know how you get on?

Thanks!

Ibu

Hi ibu Dont know of any trials or if im suitable ! I was only diagnosed last week and have yet to have an appointment with my clinic. I haven’t paid much attention previously to research such as this but im using this as a coping tool . Where do you hear/learn of trials. How does someone get onto this Gilenya trial ? My understanding (from radio programmes !) is that it assists the bodies natural myelin repair between attacks, thus reducing / preventing them. I have to tell you i know little about this and may be grasping at straws and dont want to Give anyone false hope but i need something :slight_smile:

The bit about assisting natural myelin repair referred to benztropine not gilenya

The very best place to look and/or search for info is here;

As you are recently diagnosed, it’s really important to read the right information. Stopping relapses is very important. It’s best to look here (on this site) and there and at the MS decisions site.

I know the first-line DMDs seem to not have great statistics, but statistics are just that - you’ll find that non-responders to beta-interferon count just the same as those who’ve had a 100% reduction in relapses.

I’m a responder - my relapses were cut from every 3 months to one every 3 years, on average. Since diagnosis, I haven’t progressed. Some people don’t. Lots do progress a bit - or a lot and they are then eligible for one of the newer drugs.

When I was diagnosed, I applied to go on the Campath trial in 2001. I didn’t manage to be a part of it, but it is extremely successful at cutting the relapse rate to one in every 10 years, now that’s brilliant news!.

Do let us know how you get on. Vitamin D3 helps and also you may be deficient in vitamin B12. I found that not eating gluten helps me with my nerve pain, but I also take amitriptyline. It’s a maze, trying to find a way to live with this disease. I take Low Dose Naltrexone - have a look at it. But first, get on a drug to stop your relapses - a clinically proven drug.

best wishes,

Ibu